Dysautonomiac of the month

As many of you know I am a member of a group called DYNA kids it stands for Dysautonomia youth network of America. They have members from all over the world and most of them have the same type of heart condition as me. This month I was chosen as Dysautonomiac of the month. Meaning they send "my story" out to hundreds in their news letter and sometime soon will post it on the website under the link stories. I have posted part of the news letter they sent out below so that you guys could see it. I also thought I would take this opportunity to say thank you to all of you who help me get around and put me in your prayers. I am very grateful to all of you. (I am warning though it is a long story.)



DYNA FEATURED YOUTH MEMBER:
Charlie P.UtahJoined DYNA at age 19
Charlie’s Story
My name is Charlie. At the age of ten I passed out while climbing a tree. I fell twelve feet and broke my arm. While I was in the hospital getting my arm set the doctor noticed some abnormalities and sent me to the cardiologist. I was diagnosed with Atypical Neurocardiogenic Syncope. My symptoms at first were mild, and I continued living as actively as I could. I assumed that things would stay that way. I was active in theater productions, was on Student Council, and was a competitive fencer. I was on the first all women's fencing team in Utah and medaled.
The summer before my junior year of high school I got appendicitis and never fully recovered. All of a sudden I was unable to stand without fainting. I had extreme tremors, brain fog, headaches and fatigue. The school decided I was too much of a liability and put me on home/hospital tutoring. I didn't have the energy to do physical activities like fencing anymore. Since I was not in school, I rarely saw my friends anymore. I was able to concentrate my efforts on my schoolwork though. By the end of high school I not only obtained my diploma but also a certificate in Phlebotomy and Medical Assisting.
My parents have been wonderful. They've helped me study through brain fog, and they have taken me to countless doctors' appointments and have always been supportive. They have had to fight school systems to obtain fair accommodation for me. They joke with me when things are hardest, and they are constantly looking for ways to make my life as normal and easy as possible. Thanks to the support of my parents, siblings, and extended family members I am doing so many things that I didn't think were possible.
With some accommodations, I am living on my own and am attending Utah State University. I am currently able to take 9 credit hours. I fall (literally) all the time but I always get back up and keep going. I have a great roommate who on bad days has lain on the floor with me eating salty chips. She is willing to drive me places, and scoops me off the floor at stores and restaurants. It isn't easy to find friends that aren't embarrassed or scared by this and I feel lucky to have her.
During my first year of college on a particularly difficult day I stumbled across http://www.dynakids.org/. I had never really met someone else who had been affected by dysautonomia as severely as I had, and I instantly felt comforted by the mere fact that I was not alone. Being a member of DYNA has changed how I look at dysautonomia, has helped me become more educated about my condition, and has given me hope and reassurance in times of need.
Having NCS has turned out to be more complicated, expensive, and life altering then any of us thought it would be. Even though I have been sick for about 4 years now I still miss doing the things I used to do. However, with the bad - has come good. I’ve had the chance to experience the best in people as they offer to help me. I have learned how sweet it is to go on a walk, and I could never doubt that my family would do anything for me. I am blessed.
Learn More:http://www.dyakids.org/

Donations to DYNA can be made at: http://www.dynakids.org/ via the Justgive.org link. No amount is too small to make a difference